How to Cope with Stigma

How to Cope with the AIDS Stigma

There is no simple answer for how to deal with the stigma surrounding HIV and AIDS.

Ask your doctor about local HIV/AIDS support groups. Or, ask to be referred to a psychologist, psychiatrist or clinical social worker. (Currently we do have a local support group that can offer you help and support with many issues.)

Find a hotline by looking in the yellow pages or online. Some search terms to look for include “AIDS, HIV Educational Referral and Support Services” or “Social Service Organizations.” Ask for practical advice or emotional support and these services can also refer you to local HIV/AIDS self-help organizations.

Commit to tackling the stigma and discrimination faced by people living with HIV
People living with HIV in the USA continue to face stigma and experience HIV-related discrimination. HIV discrimination is seen in all
aspects of an individual’s life – from employers, local community members, police and worryingly the health and social care system. US research
has shown that one in five people living with HIVhave experienced verbal harassment or threats.
A third reported having their HIV status disclosed without consent and one in five reported being treated differently by general practitioners.
Tackling stigma is vital to improving the lives of people living with HIV and is integral to tackling HIV.

There is a cyclical relationship between stigma and HIV; people who experience stigma and discrimination are marginalised and made more vulnerable to HIV, while those living with HIV are more vulnerable to experiencing stigma and discrimination.

Myths and misinformation increase the stigma and discrimination surrounding HIV and AIDS.

Roughly one in eight people living with HIV is being denied health services because of stigma and discrimination.

Adopting a human rights approach to HIV and AIDS is in the best interests of public health and is key to eradicating stigma and discrimination

HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS. In 35% of countries with available data, over 50% of people report having discriminatory attitudes towards people living with HIV. Stigma and discrimination also makes people vulnerable to HIV. Those most at risk to HIV (key affected populations) continue to face stigma and discrimination based on their actual or perceived health status, race, socioeconomic status, age, sex, sexual orientation or gender identity or other grounds. Stigma and discrimination manifests itself in many ways. Discrimination and other human rights violations may occur in healthcare settings, barring people from accessing health services or enjoying quality health care. Some people living with HIV and other key affected populations are shunned by family, peers and the wider community, while others face poor treatment in educational and work settings, erosion of their rights, and psychological damage. These all limit access to HIV testing, treatment and other HIV services.

The People Living with HIV Stigma Index documents the experiences of people living with HIV. As of 2015, more than 70 countries were using the HIV Stigma Index, more than 1,400 people living with HIV had been trained as interviewers, and over 70,000 people with HIV have been interviewed. Findings from 50 countries, indicate that roughly one in every eight people living with HIV is being denied health services because of stigma and discrimination.

How is HIV stigma harmful?

Stigma and discrimination add barriers which weaken the ability of people and communities to protect themselves from HIV and to stay healthy if they are living with HIV.

To persons living with HIV. Fear of stigma, discrimination and potential violence, may keep people from disclosing their status to family, friends and sexual partners. This can increase isolation and undermine their ability to access and adhere to treatment, and undermine prevention efforts such as using condoms and not sharing drug equipment. Enacted stigma can result in losing housing and jobs, being ostracized by family, and being treated badly in healthcare facilities, among other effects.

To vulnerable populations. The way people experience stigma varies across countries and communities. Stigma discourages people from seeking information and programs, for fear it will make others think they have HIV, are promiscuous or unfaithful, or are members of populations associated with HIV, like people who inject drugs, sex workers and gay men. It can make people less likely to get tested for HIV, use condoms, ask their partners about their status, use clean needles and injection equipment, or access biomedical prevention options such as male circumcision and pre-exposure prophylaxis (PrEP).

How do people cope with stigma?

Several factors help individuals cope with HIV-related stigma, and respond to feelings of worthlessness, depression, and anger associated with their diagnosis. Many people learn to manage or cope with stigma quite well and have very positive relationships not impacted greatly by stigma, especially if they have supportive family and friends.

Social support. For many PLWH, social support can help buffer the impact of any stigma. A study of African American PLWH found many had experienced stigma and discrimination, but the impact was softened by having non-PLWH in their social networks express interest and take the initiative to offer help. Connection with other PLWH gave them an opportunity to share their feelings and to fight for their rights. A study of young African American men who have sex with men (MSM) found that stigma of racism and homophobia was associated with delayed HIV testing, but that men with peer support tested earlier.

Adapting and coping. Although it can be difficult for persons in already stigmatized communities to identify as HIV-positive, many PLWH do accept their HIV status and successfully form an identity of being proactive and choosing to live. Adequate treatment for depression and anxiety, along with acceptance of one’s diagnosis, provide a protective buffer against stigma and promote acceptance of lifelong HIV treatment.

How is HIV stigma addressed?

Stigma exists, and should be targeted at multiple levels: individual, interpersonal (family, friends, social networks), organizational, community and public policy. Involving PLWH in the design, creation, implementation and evaluation of stigma reduction programs is critical to success.

Individual level

Increasing individual knowledge about HIV transmission, prevention and care, as well as access to services and legal rights is important. One study in South Africa found that while some PLWH experienced stigma through insults and arguments with family members during conflict, they knew that disclosing someone’s status without their consent was a crime. In these instances, threatening to go to the police, or sometimes actually calling the police, allowed PLWH to fight back and maintain their self-esteem.

Interpersonal level

The We Are Family campaign from Greater Than AIDS and the Georgia Department of Public Health, reinforces the importance of social support for PLWH. The video campaign features a grandmother and her grown son, a college student and his parents, a pastor and his congregation, a recovering addict and his mother, a transgender woman and her sister, and childhood best friends, all supporting one another following an HIV diagnosis.

Organizational level

Healthcare providers are often named by PLWH as important sources of stigma. Programs for training healthcare workers should address culturally-specific stigma drivers, including personal fears of infection, prejudice towards vulnerable groups, and misconceptions or lack of knowledge about HIV transmission, prevention, treatment and universal precautions. Programs also should address how the effect of stigma, discrimination, breaches of confidentiality and negative attitudes can negatively impact patients’ lives, health, and ability to follow treatment regimens.

Biomedical and behavioral approaches to HIV prevention, such as PrEP, routine HIV testing, starting treatment soon after diagnosis (test and treat), and treatment for PLWH to viral suppression, have been successful in the US and several countries in reducing new HIV infections and improving the life and health of PLWH. However, HIV stigma and discrimination can greatly impact the success of these interventions. Stigma surrounding PrEP use, including assumptions about promiscuity, can negatively affect PrEP access and uptake. Prejudice among healthcare workers may result in drug users, young adults, women and other marginalized populations not being offered either PrEP or HIV testing.

Community level

The Let’s Stop HIV Together campaign, launched by the Centers for Disease Control and Prevention (CDC), raises awareness about HIV and its impact on the lives of all Americans, and fights stigma by showing that persons with HIV are real people—mothers, fathers, friends, brothers, sisters, sons, daughters, partners, wives, husbands, and co-workers. The campaign offers facts about HIV, links to testing sites across the US, guidance for taking action against stigma, and online stories about PLWH, and the people who care for them also th U=U campaign has been gaining momentum and strength from supportive organization who recognize the importance of education on the fact that if a person has remained on HIV medication and has a continued undetectable viral load, the virus is not transmissible.

Policy level

Having policies in place for PLWHA to report discrimination in employment, health care, education and other areas is essential in the United States and abroad. Reports can be anonymous, and all reports result in mediation, investigation and legal resolution by human rights and legal organizations.

What needs to be done?

Both the US White House and UNAIDS reports recommend focusing on key populations that have high and disproportionate rates of HIV, and are at higher risk for transmitting and acquiring HIV. Reducing stigma for other conditions common among persons at risk for or living with HIV—such as substance use, mental health problems, sex work and homelessness—and addressing homophobia are important efforts to improve health outcomes. However, promotion of disclosure of HIV status must be accompanied by protections for PLWH. This calls for a continued commitment to civil rights enforcement.

We must always remember to meet people where they are, not where we want them to be, or where we think they should be, but where they are.Respecting people’s priorities and helping them reach the goals THEY set is what is important — and the odds are, if we do this, we will also be successful on the HIV treatment side.